Very, very nervous about Downs - Page 3

[umsami]

Originally Posted by TropicalGirl

You are reading the statistics wrong, it is not tru that 90% of children with down syndrome are aborted , 90% of people who do amnio to confirm DS abort, people who won't terminate either way usually don't do amnio.

OK. I'm not sure it depends on amnio/CVS though... people can make the decision based on NT as well. For example, we'll have NT, but not amnio/CVS. If I had a dx of Downs...or great likelihood of Downs... we wouldn't go ahead with the amnio/CVS as we'd still elect to continue the pregnancy, but we'd still be counted as a Dx. My guess as that NT is rather new, we're not seeing figures from it alone. The 92% figure is citing quite often--I've seen it numerous places... and it's not just the States, holds for Europe as well.

http://en.wikipedia.org/wiki/Down_syndrome

A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United Kingdom and Europe with a diagnosis of Down syndrome were terminated.[34] Data from the National Down Syndrome Cytogenetic Register in the United Kingdom indicates that from 1989 to 2006 the proportion of women choosing to terminate a pregnancy following prenatal diagnosis of Down Syndrome has remained constant at around 92%.

[Keria]

NT is not diagnostic, the statistics are amnio/CVS. Many women pass the NT scan with flying colors and then have a baby with DS, and others get a high probability and the baby doesn't have it.

[umsami]

Originally Posted by TropicalGirl

NT is not diagnostic, the statistics are amnio/CVS. Many women pass the NT scan with flying colors and then have a baby with DS, and others get a high probability and the baby doesn't have it.

Yes--it does have a false positive rate around 5%, but that does not mean that women are not choosing to terminate following a NT diagnosis.

As for whether or not it is diagnostic, I refer you to this article from the Oct 2009 issue of "Obestetrics & Gynecology"...
http://journals.lww.com/greenjournal...nd_the.19.aspx

This was principally because half of the pregnant women were given a diagnosis of Down syndrome during the first trimester after an abnormal result of nuchal-translucency measurement.

Perhaps it's just semantics... but still the vast majority of babies who are perceived to have Downs syndrome... nearly all.... are aborted today--whether it's based on NT alone... NT plus bloodwork... N/T plus absence of nasal bone...a late U/S... amnio...etc.

[Keria]

I think that yes most of i it's semantics, but NT is a screening here is a website with some info:

http://www.ucsfhealth.org/adult/medi...diagnosis.html

And I seriously doubt someone would terminate after a positive NT scan, if the NT scan is positive the next step is amnio/CVS.

[NicolleLynne]

Originally Posted by theoldmommers

I hope that you wil be able to ignore all the unasked for opinions given in response to your expressed fears. I felt the exact same way going into this pregnancy (age 42 at DD) and I knew even before conceiving that I would have a CVS in the 10th week. I know myself and my family and needed no input from others. If you have fears and concerns book an appointment with a genetic councellor ASAP. They will provide you with all the facts and answer all of your questions without bias, but with compassion. I can't tell you how much they have helped me with this and past pregnancies.

I had the results of my CVS at 11 weeks and 4 days - all clear. I just had my 20 week level II u/s to check for heart and palate defects that run in my family. Again perfect! Could there be other problems - sure - but the ones that prevent me from living my life due to anxiety are now at rest. I can enjoy this pregnancy and be healthy which is the best thing to offer my LO.

All the best to you and I hope you can be heard and get what you need.

Hi Suzannah,

I just wanted to second the sentiments expressed here. I'm also an older mom, 39 now, 38 when I conceived and have had two losses due to fatal chromosome disorders. With my past, I also knew before I conceived that I would want a CVS. The required genetic counseling you receive before the test is incredibly reassuring and if you decide afterward that you don't want the procedure, there's no pressure whatsoever to go ahead with it. My counselor was very kind, very patient and had all the latest scientific information on hand to share with my husband and I. One thing she said that really helped and was reiterated by my perinatologist was that 97% of the time, everything turns out fine for women in my age group. I really appreciated that focus on the positive rather than the negative, despite my sad history.

I got my preliminary CVS results at 10 weeks 5 days and the full results at 12 weeks. I'm now 20 weeks pregnant with a healthy, baby girl. I'm not trying to push you toward having a CVS. I would never advocate invasive testing to any mother. It's too personal a decision and every woman needs to weigh the risks and benefits for herself... I do want to advocate meeting with a genetic counselor, however. Nothing alleviates anxiety more than knowledge. Best of luck to you!

[zinemama]

I'm sure the OP is well aware that there are many wonderful people with DS. I'd be surprised if this was news to anyone. Nowhere did I see her disputing that. And I'm sure she is equally aware that many special needs diagnoses are only made after birth. No one can predict these things.

DS, however, can be predicted. And the OP already stated:

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle.

Obviously she and her family would deal if they had a child whose special needs showed up after birth. Most people do. But not having a child with DS is something they can control and have already decided on.

OP, I also hope you can ignore the unasked-for comments and opinions here.

[gcgirl]

Originally Posted by zinemama

I'm sure the OP is well aware that there are many wonderful people with DS. I'd be surprised if this was news to anyone. Nowhere did I see her disputing that. And I'm sure she is equally aware that many special needs diagnoses are only made after birth. No one can predict these things.

DS, however, can be predicted. And the OP already stated:

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle.

Obviously she and her family would deal if they had a child whose special needs showed up after birth. Most people do. But not having a child with DS is something they can control and have already decided on.

OP, I also hope you can ignore the unasked-for comments and opinions here.

As a parent who has made a termination decision based on diagnostic testing (not Downs), I also want to express my support for your concerns. I don't usually post about it here because you end up with exactly the posts you are getting.

The main thing is you can only make decisions based on data you HAVE. YOu can't predict everything, and testing isn't 100%, but we do the best with the information available. One thing you currently DON'T have is information, and I think that's what you need to put your mind at ease. Just because you have family members with Downs doesn't mean you'll have it - it's mainly chromosomal. Take the advice of others on this thread and meet with a genetic counselor and look into all the forms of testing you may need. You CAN'T get a 100% accurate answer, but you can get a lot of information that adds up to a big picture.

I'm not sure I'd terminate in the case of Downs; it's one I just hope to avoid because the decision is so hard. The decision we made was the hardest thing I've ever been through, but we know we did the right thing. Only YOU and your family can make the decision for yourselves.

My best to you.

[umsami]

I just wanted to point out some interesting research by Brian Skotko, M.D. He's done a lot of research at Harvard on how diagnosis of DS are delivered... and how they should be... as well as how OBs actually deliver the news/try to influence, etc. It's really quite fascinating...and a bit disturbing... as well... on how unprepared some OBs are... on how biased (both ways) some admit to being, etc. (Stressing only negatives... or only positives, etc.) He's also been pretty active in working with geneticists, perinatologists, and others on improving how they treat/inform women faced with these issues, information given, etc.

Here's a recent article of his...

http://www.brianskotko.com/images/st...linesfinal.pdf


One thing that comes through is that most women wish that the news was given in person, with their partner (or a support person), present. So, I urge the OP and any other Mamas facing this to go with a friend/partner/support person. If you can't arrange to have it given in person, having a pre-arranged time for a phone call is another option that is recommended.

[MJB]

Originally Posted by zinemama

I'm sure the OP is well aware that there are many wonderful people with DS. I'd be surprised if this was news to anyone. Nowhere did I see her disputing that. And I'm sure she is equally aware that many special needs diagnoses are only made after birth. No one can predict these things.

DS, however, can be predicted. And the OP already stated:

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle.

Obviously she and her family would deal if they had a child whose special needs showed up after birth. Most people do. But not having a child with DS is something they can control and have already decided on.

OP, I also hope you can ignore the unasked-for comments and opinions here.

I'm another mom who would terminate if I received a Downs diagnosis during pregnancy. I would *prefer* not to have a special needs child, and will do what I can to prevent it, although of course if it happened I would deal with it and love my child. My husband and I are in full agreement on this issue, and I don't really see how it's anyone else's business.
OP, I hope the testing comes back clear!

[Pinoikoi]

Originally Posted by zinemama

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle.

Obviously she and her family would deal if they had a child whose special needs showed up after birth. Most people do. But not having a child with DS is something they can control and have already decided on.

Well I disagree. Sometimes a special needs child can be a great financial burden. If someone can't handle that kind of burden from the get go are they supposed to pull themselves "up by the bootstraps" to make enough money to handle the difference? If that is so, then why is finances an issue regarding special needs kids even before birth?

And frankly I think there are some disorders out there that are far worse to handle "emotionally" than down syndrome. If one is unable to handle the emotional stress of that, how in the world do they handle the emotional stress of something even more challenging?

"Obviously she would deal..." I just don't see that to be true anywhere based off the posts presented.

[KatWrangler]

Originally Posted by Pinoikoi

Well I disagree. Sometimes a special needs child can be a great financial burden. If someone can't handle that kind of burden from the get go are they supposed to pull themselves "up by the bootstraps" to make enough money to handle the difference? If that is so, then why is finances an issue regarding special needs kids even before birth?

And frankly I think there are some disorders out there that are far worse to handle "emotionally" than down syndrome. If one is unable to handle the emotional stress of that, how in the world do they handle the emotional stress of something even more challenging?

"Obviously she would deal..." I just don't see that to be true anywhere based off the posts presented.

I will back you up. There is no indication from the OP that she or her family could handle or even deal with a child with special needs of any kind. Honestly, having a child is a crap shoot. Having a child with DS is a piece of cake (not that it's easy...I know that) compared to what I have read from other parents in special needs parenting forums and what I have seen from personally being in Children's Hospitals. I just don't get the hang up about DS. I really don't.

I mean if unless the OP states otherwise...

[Keria]

If it's nobodyy else's business why post it online?, personally I'm not trying to change the OPs mind or anyone else's for that matter, I think people should just say I don't want a child with down syndrome, no excuses needed, beacuse the "my family couldn't deal with it" excuse it's either a lie or you shouldn't be getting pregnant if you really cannot deal with a SN child.

And I think the OP knew it was a sensible topic when she posted and she posted anyways. I understand she needs support and she is scared, but I also understand why someone with a SN child is hurt by a post that basicly says I don't want a child like yours.

[Suzannah]

I am going to ask the moderators to lock this thread. I appreciate the support I have received. I do not, however, feel like being bullied but others. You don't know me. You don't know what I have dealt with in the past. You don't know my experience with special needs children. You can assume all the worst, but that's all you are doing: assuming. Again, I appreciate all of the posts, even the ones posted in opposition that were not worded as an attack.